Coronavirus FAQs

These are the answers to questions about COVID-19 posed by you. We will keep you up to date with any new information and advice as we get it.

Questions

If you suspect you have COVID-19

Speak with your ILD team first if you have symptoms of COVID-19.

Do not visit your specialist hospital or GP surgery.

If you are showing mild symptoms including a fever and cough, continue with your anti-fibrotics as prescribed and take paracetamol for your fever.

If your symptoms progress or you become increasingly breathless, call NHS 111 or visit the NHS 111 Coronavirus site.

What does the latest news on a third vaccine mean for me?

The JCVI have announced that people with severely weakened immune systems should have a third vaccine dose as part of their primary COVID-19 vaccination schedule.

Please see for further details

Why is shielding being paused? What is the evidence base for this decision?

The decision to pause shielding has been taken based upon the latest scientific data and on the recommendation of the Chief Medical Officer.

• Since the national restrictions and shielding measures were introduced in January, cases of COVID-19 have fallen considerably across all parts of the country. Prevalence rates are now low enough that the Government can relax shielding advice.

• In addition, the majority of Clinical Extremely Vulnerable people have now received their first dose of the vaccine. Whilst no vaccine can be 100% effective, this means people are in general better protected against the virus.

I'm on immunosuppressant drugs and have had 2 COVID jabs, can I start meeting people again?

Evidence suggests COVID vaccines are less effective if you are taking immunosuppressants. However, it is not yet clear how much less effective. So, if you take immunosuppressant drugs, even if you’ve had two COVID jabs, you may need to be cautious when meeting people outside your immediate family group.

Research shows that all pulmonary fibrosis patients may choose to be careful to avoid infection because they are more likely to get severe COVID, if they are hospitalised. However, vaccines are extremely effective at reducing hospitalisations, so pulmonary fibrosis patients who are not on immunosuppressants should be reassured. These patients may still want to take extra precautions.

Read the latest government advice on shielding.

Will I need to shield again in the future? How will those decisions be taken?

• In the future, the Government will only reintroduce formal shielding advice in the very worst affected areas and for a limited period of time. This will be based on a recommendation from the Chief Medical Officer.

• The Government will write to you separately to inform you if you are advised to shield. You are not advised to follow formal shielding advice again unless you receive a new shielding letter advising you to do so.

How do I know if I’m on immunosuppressive drugs?

Pulmonary fibrosis patients taking immunosuppressive drugs include people living with:

• pulmonary fibrosis associated anti-immune diseases like rheumatoid arthritis or systemic sclerosis

• Solid organ lung transplants, who take anti-rejection drugs.

A variety of immunosuppressive medicines may be prescribed to these patients. They include: methotrexate, mycophenolate mofetil, azathioprine, rituximab, cyclosporine, tacrolimus and cyclophosphamide.

If you are in any doubt about whether the drugs you take are immunosuppressants, you could contact your respiratory clinician or GP.

Can I take the vaccine if I’m on immunosuppressants? If I can, will it work as well as it does for other people?

People on immunosuppressants will be offered the vaccine. But, at present, scientists are not sure whether the vaccines will trigger the necessary ‘immune response’ in patients with compromised immune systems.

Because of this, the government prioritisation guidelines state that the live-in partners of all immune suppressed people should be offered vaccination at the same time as their immune-supressed partners, even if they are younger.

The MHRA and scientists are currently examining available data and will be monitoring the situation carefully in future. Until there is a clear recommendation from government, people on immunosuppressants are advised to carefully assess the risks of mixing socially with other people.

Will the vaccine make my PF worse?

It is highly unlikely that any of the vaccines with make pulmonary fibrosis worse. This is because vaccines cause an immune response but do not cause the cellular damage, which might lead to fibrosis.

The safety of all vaccines given in the UK will be checked carefully by the MHRA (Medicines and Healthcare Products Regulatory Authority), a world-renowned organisation.

I haven’t had my second dose yet / I have not yet had my vaccine – is it ok for me to stop shielding?

• The decision to pause shielding has primarily been taken based upon prevalence rates. The prevalence of the virus in the community is now low enough that the Government can relax shielding advice.

• We would still encourage everyone to take up the vaccine when they are offered it. If you have received your first dose, it is important you take up the second dose when offered as this should increase your level of protection.

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I haven’t heard about my next hospital appointment, what should I do?

It is vitally important that if you suspect or have a type of pulmonary fibrosis that you have regular check ups, including a lung function test. Many hospitals are working through a backlog of patients resulting from Covid-19 and reduced capacity because of stringent and necessary cleaning routines required between appointments.

No matter what your health is like we recommend you have your physical check up as soon as possible. Contact your ILD team by phone and email explaining your current health status and length of time since your last appointment.

Will the Government be writing to clinically extremely vulnerable people?

Yes, the Government will write to everyone on the Shielded Patient List in England advising them of these changes. Emails are also being sent where individuals have registered their email address with their GP. The letters will be available online here and the main guidance page will be updated from 1 April.

• Accessible versions of the letter will be produced as soon as possible and made available on GOV.UK.

What about my medical treatment?

All respiratory teams are busy but trying to catch up with patients regarding their treatment plans. We encourage you to be proactive and get in touch with your team over the phone.

Preventing others from infecting you

If you live with others, it’s hard to keep separate from them. But you will reduce your risk of getting COVID-19 if you:

Keep 2 metres (3 steps) away from other family members, sleep on your own and use separate towels and a separate bathroom, if possible
‍‍Keep shared spaces such as kitchens, bathrooms and sitting areas well-ventilated and minimise as much as possible the time other family members spend in these areas.‍
Clean any shared bathrooms every time they are used and try to use the kitchen at different times. Family cutlery and crockery should be washed well. Use a separate tea towel for the cutlery and crockery you use.‍
Get everybody in the house to wash their hands frequently (20 secs with soap), avoid touching their faces and clean frequently touched surfaces.

Note: Shielding is for your personal protection. It is your choice whether to follow the advice. Individuals who have less than six months to live or some others in special circumstances, could decide not to undertake shielding.

What about my oxygen supply?

There are no issues with the supply of oxygen. You may want to speak to your supplier for reassurance:

‍Air Liquide covers the following Trusts :
NHS Darlington, NHS Durham Dales, Easington and Sedgefield, NHS Gateshead, NHS North Durham, NHS South Tees, NHS South Tyneside and NHS Sunderland (0800 022 3445)

Baywater Healthcare covers North West England, West Midlands, Yorkshire and Humberside and Wales (0800 373 580)

British Oxygen Company (BOC) covers the East of England, East Midlands, North East England and Northern Ireland (0800 136 603)

Dolby Vivisol covers the South of England (0800 917 9840) and Scotland (0800 833 531)

‍I'm feeling more breathless. Can I have an oxygen test?

Most hospitals are able to test do oxygen tests again. Waiting times for your test can be quite long so we recommend you book one as soon as possible.

Many hospitals have new safety measures so make sure you receive a letter confirming your appointment and what it is you are required to do or wear. If you are feeling more breathless than usual, we suggest you contact your ILD clinical nurse specialist and your GP.

Keep phoning until you have a response. There are many things you can do at home to help to improve breathlessness, such as using a handheld fan, breathing exercises and upper chest exercises. Read more on breathlessness.

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What happens if I am admitted to hospital?

We strongly recommend you complete our medical information form and make sure this is with you plus any recent letters from your ILD Teams if you are taken in to hospital. Do use the back of the form to add any additional information that you feel is helpful and specific to you.

It’s a good idea to think through what the first 12 or 24 hours might look like if you went to hospital. Questions to ask yourself or discuss with a loved one:

Once I know where I’m going to be admitted to, what will I need to take with me?
Who needs to know and how can I tell them?
Who can travel with me/take me?

We know that some people living with very advanced pulmonary fibrosis may choose to call their local hospice if they are already accessing support from the palliative care teams instead of 111. It’s a good idea to let family or friends know your wishes.

Should I wear a face mask?

Read the government’s latest guidance on face coverings.

At APF we are supportive of the use of face coverings. We strongly recommend wearing a face covering on public transport or when attending a hospital as a visitor or outpatient.

Remember that wearing a face covering is there to protect others and works best when social distancing too.

If you are unable to wear a facemask because it impacts your breathing, this is OK too. You can download the government’s exemption badges and printouts or order an APF lanyard.

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‍Scotland | Wales | Northern Ireland | England

What about medications and the coronavirus?

There are no issues with the supply of drugs to fulfil prescriptions. The companies producing the two anti-fibrotic drugs have assured the European IPD Federation (EU-IPFF) and APF that supplies will continue uninterrupted.

Medications for other conditions should be requested in the usual way and will be sent to your nominated pharmacy. Expect at least 24h before collection / delivery because pharmacies are working under pressure.

What can I do to help others?

Contact your support group organiser and offer to call members of your support group to ‘check in’ and stay in touch
Share any skills you have to help others stay in touch with friends and family online
Encourage people to get online and follow APF on social media
Share your tips on how you are keeping busy, teach others a skill or share a joke

This page was originally published on 8 March 2020, and was last updated on 3rd September 2021. This advice is updated as new information becomes available.